I learned at my 10-week ultrasound that my husband and I would be blessed with having twins. When I returned to the doctor’s office at 29 weeks, I laid on the table to receive a routine ultrasound. The ultrasound tech seemed a bit different and almost eerie in her silence while looking at the screen. She told me that I had an excessive amount of fluid around baby #2 (who was my baby girl Caleigh). Because I was 29-weeks pregnant with twins, my doctor admitted me to the hospital, and I was monitored by the maternal-fetal medicine specialists for approximately two weeks. All of the invasive fetal tests came back inconclusive, including my amniocentesis. I was sent home after that two weeks, to be on bed rest going forward.

I delivered Caleigh at 37 weeks and 1 day – pretty good for a mom of twins. Carter Grant, born 6lbs. 6oz., came first, beautiful and healthy. About a minute later, Caleigh Rae was delivered into the world with her fingers and toes fused together. Within moments, the nurse practitioner brought Caleigh over in an isolette bed and said she was taking her to the NICU. On day three, several doctors walked in and said that they believed Caleigh was having small seizures and they wanted to monitor her more closely. I finished the doctor’s sentence and said “and you are sending her to Cardinal Glennon?” The doctor said, “Yes.”  It was then when it hit me – and for several days, I cried and prayed.

Caleigh spent 1 1/2 weeks in the NICU. Upon discharge, she was scheduled to see several specialists including a plastic surgeon, orthopedic surgeon, neurologist, cardiologist and a genetics specialist.  We spent countless hours at appointments for the next several months. We started physical therapy and occupational therapy at home. Then we got a call from the genetics specialist when Caleigh was about 4 months….and she was diagnosed with Apert Syndrome (AS). Apert Syndrome is a genetic disorder that causes abnormal development of the skull, face, hands and feet. The defective gene in babies with AS allows the skull bones to fuse together prematurely, a process called craniosynostosis. The brain continues to grow inside the abnormal skull, putting pressure on the bones in the skull and face. The fusion of the skull bones, as it affects the brain, can also disrupt intellectual development. Cognitive abilities in children with AS range from normal to mild or moderate intellectual disabilities. Apert Syndrome affects an estimated 1 in 65,000 to 88,000 newborns.

Caleigh Rae is currently 17 months old and has had a total of four surgeries at SSM Health Cardinal Glennon Children’s Hospital with Dr. Alexander Lin and his amazing team!  ALL SUCCESSFUL!! PRAISE BE TO GOD! Though there is no cure for Apert Syndrome, the surgeries have helped correct some of her current issues. Caleigh was born into the household of a Registered Nurse and a Special Education Teacher for a reason. We created the “Rae” of Sunshine Foundation, inspired by our journey. Our mission is to raise awareness, hope and support by providing the families and the community an understanding of Apert Syndrome and how to persevere through some of the most difficult and challenging times during a child’s development. This has been a life-changing experience for our family, and we look at this both as a blessing and an opportunity to give back.

Sincerely,
Crystal & Chris Jackson

Please join us and #TeamCaleigh #GBR16 in raising funds to support Cardinal Glennon’s lifesaving work! So many children and families benefit from this amazing hospital and we are excited to help make it even better! Every penny raised will go to the hospital and directly affect the children.